chronic pain management

“Tell me like it is, Doc” – What to say when you need to tell someone their pain is probably ongoing


About 30 or more years ago I was diagnosed with chronic pain. I’d had low back pain for a couple of years and I was finding it SO hard because of my work in Older Person’s physical rehabilitation. I had treatment after treatment with no change in my pain. I had an X-ray that told me I had a “transitional” vertebra. I thought this explained why my pain persisted and I was hoping someone would be able to “unstick” this vertebra and my pain would be gone. I was referred to a chronic pain management centre and the wonderful Dr Mike Butler, Rheumatologist and pain specialist there told me “There isn’t a medical answer to your pain problem.” Luckily for me he didn’t leave it there – he suggested I read The Challenge of Pain by Melzack and Wall.

But I will admit, I walked away from that appointment feeling absolutely devastated, thinking “I’ll have to live like this forever”.

What I didn’t know at the time was that the way Dr Butler gave me this news is a rarity. I am so grateful that he did, even though I was completely floored and had no idea about what I could do to get on with life. (I began searching the libraries for information on chronic pain, and came across a book by Connie Peck in which she described a behavioural approach to increasing function – and I used this after having devoured the Melzack & Wall book).

Things that were done well:

  1. My physical examination results were fully described and explained to me. While I didn’t have any beliefs about possible cancer or ending up in a wheelchair, it was good to know that my examinations were completely normal with the exception of allodynia and widespread pain over my entire back.
  2. I was given the news pretty straight. Being told “there isn’t a medical answer to your pain problem” meant I stopped looking for the complete cure. And I never once got the suspicion that anyone thought the problem was psychological, fabricated, or that I was just a bit pathetic.
  3. Being given additional resources that gave me information over and above the basics really helped. The book by Melzack and Wall was a real stretch for me at the time, lots of explanations I didn’t fully understand – but it satisfied my curious mind, and gave me a full explanation that helped me make sense of what was going on. And it opened the door for me to realise that my pain wasn’t an indication of ongoing damage. It also gave me an understanding that what I believed, thought and felt could influence my pain. And that was a powerful thing.

If you’d asked me whether I “accepted” my pain, I think I would have clubbed you! I did NOT want this pain. I was still looking for things to reduce my pain – or at least not flare it up. The realisation that my pain would do what it wanted, when it wanted, was something I could only learn over time. And this is an important point: there are some things we need to go through as part of a process. Simply telling someone something does not inevitably mean it’s going to hit home at that time, unless the person is ready (think stages of change here).

If I frame this process within the findings from my research, the first part of learning to live well with pain is making sense. Making sense requires diagnostic clarity, and part of that is having a prognosis. This helps shape future expectations. It’s incredibly difficult to plan a future when the future is hazy. Delaying the point at which the ongoing nature of persistent pain is made explicit seems to me to be delaying the point at which the future becomes clearer – and I think this in turn prolongs disability and distress.

Drawing from my reading around the subject, I think the following might be a useful and pragmatic approach to advising someone that their pain is likely to remain. I hope people living with chronic pain will chime in here and help me out – what would this approach have been like for you?

  • Ensure examinations are explained – especially what you’re looking for, what you’ve found, and what this means. And particularly explaining what negative findings don’t mean.
  • Avoid looking for the mythical and improbable “rare” disorder. Especially if this means delaying the point at which you have to say “and this pain isn’t likely to go away”. I think this is something many medical practitioners are afraid of. Rare disorders are just that: rare. And most of the ones that will kill or disable have very clear indicators apart from ongoing pain. You KNOW this, so let your patients know this.
  • Find out the main concern of your patient. In my case, it wasn’t that I was going to die or end up in a wheelchair, it was much more about “how am I going to live like this – suffering – for the rest of my life!” The “suffering” part was the REAL problem, not the pain per se.* What a shame so few health professionals even bother to find out about their patient’s main concern – maybe it’s feeling old before your time, maybe it’s about becoming a parent, maybe it’s about being just like my mother, maybe it’s about sleep, work – whatever.
  • Directly address the main concern of your patient. Reflect that you’ve heard what their main concern is. Say it back to them, and yes, even use cliched phrases like “It sounds like” – whatever you do, make it clear you’ve heard the person’s main concern. Then begin to discuss what can be done to address that concern. It might take another appointment to do this, but that’s a whole lot better than sending your patient back home without having had his or her concerns understood – or worse, to ignore those concerns and send your patient off for another round of treatments that just don’t help them resolve whatever that concern is.
  • Give space and time for your patient to get their head around this new reality. Do this by letting them know, directly and clearly, that you’ll be there for them while they do this. You know, it might mean not “treating” the person for a couple of appointments, but instead, giving your patient the respect of providing a safe space for them to be there and process what’s going on. Don’t just begin “your” treatment programme as if nothing has happened. And don’t just send the person off without making a time to catch up again. Remember, treatment is as much about an interaction as it is about the therapeutic whatever that you use (Benedetti, 2013).

I have no idea if this approach is the right one, but it seems to me to address some of the things that people living with pain have told me. They’ve said things like “no-one ever told me it would go on”, “I just got pills but I was worried about how I could stay at work”, “I didn’t know why I was doing exercises”, “no-one bothered to find out how my relationship was going”, “they just wanted me out of the office as quickly as possible”, “I was in the too hard basket”.

The most precious thing in life is time. Perhaps we health professionals need to value the time we spend with people a little more than the procedures we carry out. Perhaps reimbursers could equally see that the active ingredient in most treatments is the interpersonal part – and maybe this should be funded well.

*Suffering, to quote Eric Cassel (1999) is about the threat to self-concept – that I would not, could not, do the things that express who I am. Now I don’t think my doctor really addressed this, and I am lucky I’m a geek and love reading, because I learned this through the books I devoured. What I learned was that I could express my self-concept despite my pain. I just had to learn to do things differently.

 

Benedetti, Fabrizio. (2013). Placebo and the New Physiology of the Doctor-Patient Relationship. Physiology Reviews, 93(3), 1207-1246. doi: 10.1152/physrev.00043.2012

Cassell, Eric J. (1999). Diagnosing Suffering: A Perspective. Annals of Internal Medicine, 131(7), 531-534. doi: 10.7326/0003-4819-131-7-199910050-00009

 

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Teams, roles, and contributions


ResearchBlogging.org
I’m quite keen to generate some more discussion about how individual professions can contribute within Interdisciplinary/Interprofessional Team without being defensive of their contribution, nor allowing other disciplines to encroach on their specialist skills.
I really struggle with the whole concept of “role definition” because so often I see “the OT role is…” without considering that there are a number of core areas many health professionals in pain management use such as goal setting, relaxation, pain “education”, activity pacing/management, relaxation, biofeedback, cognitive behavioural therapy.

Some examples: Once I heard an occupational therapist say that only occupational therapists should “set functional goals”. Yet if goal-setting is client-centred, I can see how physiotherapists, nurses, social workers, psychologists and doctors can ALL work with a person to “set functional goals”.

I also heard an occupational therapist suggest that “only” occupational therapists should go into the home, or workplace. Yet I’ve had some fabulous physiotherapists and psychologists go into both these places and do fantastic work.

The current debate is whether occupational therapists or physiotherapists should do mirror therapy or laterality training.

Sadly I also heard of a doctor who told the interdisciplinary team that he thought it was fine to advise a person to begin a walking programme – without consulting a physiotherapist! Oh no! How dare he! Actually, isn’t this what many nonmedical clinicians have been wanting our doctors to do? And if a physiotherapist begins talking about function in the real world, isn’t this what occupational therapists have been saying physiotherapy doesn’t do but should? Seems to me we don’t recognise our own cognitive dissonance even when it’s sitting right in front of us.

To be quite honest – I don’t care WHO does what! As long as a clinician is competent, the client has had a hand in establishing priorities, and there aren’t two clinicians doing exactly the same work, to me it does not matter.
BUT I’d love to find out some other points of view, and poke holes in my assumptions – so, go to it ladies and gentlemen!

Someone asked me “so what are the skills people should have to work in chronic pain management?”

  1. I’m thinking about this right now – firstly, people who “get” pain. So well-educated, knowledgeable people who have a really good grasp on neurobiology and psychology of pain. I don’t really care about the professional background, but I’d like someone who can reassure patients/clients that their pain (a) has a name (b) doesn’t mean its harmful (c) can be managed. I would help if one person in the team can prescribe rationally.
  2. Someone should address movement and pain – don’t care if it’s an occupational therapist, physiotherapist, exercise physiologist or whatever. Best if this person can grade movement from simple/low intensity to higher and definitely functional intensity. And critically, that person needs to know the relevance of any exercise on what the client/patient does in daily life.
  3. Someone else needs to talk about the meaning of pain on the sense of self, and help the person understand that doing things differently doesn’t mean losing your self concept.
  4. It would be good to have someone who understands behaviour, and interactions between behaviour, emotions and cognitions.
  5. Absolutely, someone in the team needs to help the person identify what they WANT to, or NEED to do to feel complete, then help the person work out ways to do that.
  6. And I think it’s vital someone can interpret psychometrics, and knows enough about outcome measurement to produce regular reports on how participants in pain management are doing once they leave the service.

And all the other things like using biofeedback, diet, relaxation, communication, health literacy, would need to be incorporated by those will skills in these areas.

I think teams need someone who will bat for them in management, someone who really cares about the team and how it functions, and will wave the flag in terms of retaining an interdisciplinary self management focus, ensuring the team remains client-focused and team-focused, rather than discipline-focused.

Teams need to negotiate their contributions (note I say contributions not “roles” – contributions are offered, roles are defined and possessive). Team members need to renegotiate what they can offer when new team members join the team, or when a team member develops a new skill. Defining one “role” means, implicitly, that other roles are also “defined”. Sometimes this happens without negotiation. And if role definitions are not regularly reviewed, innovation and responsiveness drops, positions get reified – and we end up with a cookbook approach to pain management that means the personal relationship between the person who has pain and his or her clinicians is valued less highly than the professional title of the clinician. I don’t see this as client-centredness.

One argument for defining roles is to avoid duplicating skills. It’s intended to ensure “the right clinician with the right skills sees the right patient at the right time”. I think this ignores the common skills all clinicians working in chronic pain management need. It ignores individual team member development. It means clinicians who are not “meant” to do the tasks nominated within another role’s definition can’t develop their skills to support one another within the team. It creates barriers and obstacles to developing a common language, using a common model (cognitive behavioural approach, in the case of chronic pain management), developing common goals. It can lead to multidisciplinary practice instead of interdisciplinary/interprofessional teamwork.

It can, unintentionally, create over-servicing because instead of selecting clinicians to work together on the basis of what the client/patient needs, professional demarcation lines are drawn and THREE clinicians need to work with the client/patient instead of two. Maybe even more because if the person needs to develop communication skills at work – maybe the occupational therapist “should” work on this; if the person needs to develop effective communication at home – maybe the social worker “should” be involved; maybe it “should” be the psychologist because it’s about the person’s core schema. See how complex this can become? It’s even more difficult if we look at activity management. Should the occupational therapist be involved because it’s about occupation? Or the psychologist because it’s about contingencies and core schema? Or the physiotherapist because it’s about building exercise tolerance? Or the social worker because it’s about negotiating boundaries with other people?

Teamwork – more than a group of clinicians who happen to work with the same patient.

 
Sandra G Leggat (2007). Effective healthcare teams require effective team members:
defining teamwork competencies BMC Health Services Research, 7 (17), 1-10 : 10.1186/1472-6963-7-17

Gratitude when you’re in pain? You’ve got to be kidding!


ResearchBlogging.orgOr – introducing the “parent of all virtues” (Wood, Joseph & Linley, 2007).

For some time now I’ve been exploring the contribution of positive psychology on wellbeing in people with chronic pain.  Positive psychology is the ” scientific study of the strengths and virtues that enable individuals and communities to thrive”. (Seligman, ND). It strikes me that in chronic pain management, we’ve responded to the issues raised by people who don’t “live well” with their pain, leaving the group of people who do cope well largely ignored. We have much to learn, I believe, from those who have faced their situation and either been stoic – or in a surprising number, grown from their experiences.  Some excellent resources in the field of positive psychology in general can be found at The Positive Psychology Center and Authentic Happiness, and for Kiwi’s, the New Zealand Association of Positive Psychology.

Gratitude is an emotion that most people feel frequently and strongly (McCullough et al., 2002).  Most people say that feeling grateful makes them feel happy. And oddly enough, gratitude seems to emerge despite difficult circumstances – with some research suggesting that it is in times of intense personal challenge that gratitude is most prominent (Peterson & Seligman, 2003). Immediately after the earthquakes in Christchurch nearly a year ago, people frequently expressed gratitude for one another, for the workers who kept the city running, and for the simple things in life like water, shelter and social support.

The question then arises – is experiencing gratitude empirically related to psychological wellbeing? And the answer is, not unexpectedly, yes! One study showed that gratitude was associated with wellbeing more than the “big five” personality model (Wood, Joseph and Maltby, 2009). It appears that gratitude influences wellbeing in two ways: “directly, as a causal agent of well-being; and indirectly, as a means of buffering against negative states and emotions.” (Nelson, 2009).

The next question is – can we influence wellbeing by increasing gratitude? And so far, research seems to support it.  For instance, in Catherine Nelson’s 2009 review of gratitude interventions, she cites studies in which one group of participants were asked to write down five things they were grateful for each week over 10 weeks, while two other groups were asked to carry this out daily either for two weeks or three weeks. At the completion of the study, it was found that positive affect was increased, and that there appeared to be a dose-response effect. In other words, the more often gratitude was expressed, and the longer this was carried out, the more positively people felt (Emmons & McCullough,
2003).

Interestingly, although we think of gratitude as having an effect on emotion, expressing gratitude can have a direct influence on “physiological coherence”.  This is “increased synchronization between the two branches of the ANS, a shift in autonomic balance toward increased parasympathetic activity, increased heart-brain synchronization, increased vascular resonance, and entrainment between diverse physiological oscillatory systems. The coherent mode is reflected by a smooth, sine wave-like pattern in the heart rhythms (heart rhythm coherence) and a narrow-band, high-amplitude peak in the low frequency range of the HRV power spectrum, at a frequency of about 0.1 hertz.”(McCraty & Atkinson, 2003). What this means is that by expressing gratitude, we may be improving our physiological response to life events.

How do we introduce the idea of expressing gratitude when life is difficult? – for this part of my post today, I’m using my approach, because I haven’t yet found research that identifies “the best way” to do it!

My way is to begin with some mindfulness. Sitting with the person and asking them to be present with what is happening right now. This can be done through focusing the mind on breathing, really experiencing the sensations that occur while breathing – the rise and fall of the abdomen, the cool air in the nostrils when breathing in, the warmer air when breathing out, the heart beat, the weight of the body pressing against the surface of the chair or support, the warmth of hands on lap.

I then ask the person to think of something that they appreciate right then and there. I might say “What comes to mind when you think of something you’re grateful for right now.” If they seem stumped, I might suggest that they express appreciation for being able to breathe; or being able to hear – and I might guide them to sounds of nature; or having a chair to sit on – and I might guide them to experience the sensation of being supported by the chair.

I try to guide the person to identify at least four or five things they appreciate then and there, so they can experience what it feels like to mindfully notice the good that is around them, and to notice the emotions that arise from doing so.

Ongoing practice I then give people is to write down three things they appreciate or are grateful for at the end of each day just before going to sleep.  Research has shown that doing this can influence sleep quality (Wood, Joseph, Lloyd & Atkins, 2009).

So, here’s a thought: what about trying this strategy out for yourself? It’s easy, quick and has some surprising results. Let me know how it works for you.

Emmons, R.A. & McCullough, M.E. (2003). Counting blessings versus burdens: An experimental investigation of gratitude and subjective well-being in daily life. Journal of Personality and Social Psychology, 84(2), 377–389.

McCraty, R. & Atkinson, M. (2003). Psychophysiological coherence. Boulder Creek, CA: HeartMath Research Center, Institude of HeartMath, Publication No. 03-016.

Nelson, C. (2009). Appreciating gratitude: Can gratitude be used as a psychological intervention to improve individual well-being? Counselling Psychology Review, 24(3-4), 38-50.

Wood, A., Joseph, S., & Linley, A. (2007). Gratitude – Parent of all virtues. The Psychologist, 20(1), 18-21.

Wood, A. M., Joseph, S., Lloyd, J., & Atkins, S. (2009). Gratitude influences sleep through the mechanism of pre-sleep cognitions. Journal of Psychosomatic Research, 66(1), 43-48.

Wood, A. M., Joseph, S., & Maltby, J. (2009). Gratitude predicts psychological well-being above the Big Five facets. Personality and Individual Differences, 46(4), 443-447.
A Wood,, S Joseph, & A. Linley (2007). Gratitude – Parent of all virtues The Psychologist, 20 (1), 18-21